The Maine Millennial: On autism, awareness and acceptance

April is Autism Awareness Month. A lot of autistic self-advocacy organizations – that is, organizations primarily run by autistic people, rather than parents or doctors – would prefer it to be known as Autism Acceptance Month. I’m kind of in the middle on that – I think people need to be aware of autism before they can accept it. Awareness is necessary for acceptance.

I wasn’t diagnosed with autism spectrum disorder level one until I was 30. There are a couple of reasons for this, but the biggest one is that my parents managed to create such a loving, supportive and accepting family growing up that nobody really noticed I had autism.

Most people don’t seek a diagnosis for anything unless they’ve noticed a problem with it; you don’t seek a diagnosis to get to the bottom of mystery back pain if your back isn’t in pain. For the longest time, I didn’t have any struggles that were bad enough to lead me to look for answers. My parents were pretty forward-thinking for the early 1990s. When they had children, they decided to double down on “meeting your kids where they’re at.”

So they saw their daughter, who was obsessive about schedules and routines, who fiddled nonstop with her hair, who had some tone and volume control issues, who took things pretty literally, and basically shrugged and said, “That’s just Victoria being Victoria.” I had some social struggles, but I never lacked for friends because my parents taught me to be kind and friendly, and you can be forgiven for quite a few social faux pas if you make an effort to be a nice person. And, of course, my dad constantly reminded me to look people in the eye when I was talking to them. I still hear his voice in my head sometimes. I think he was reminding himself, too.

I know people whose parents weren’t as accepting. A lot of the times it came from a place of love and worry; for example, they would discourage “stimming,” self-stimulatory behavior that presents as repetitive noises or motions, such as rocking back and forth or, in my case, rubbing the ends of my hair over my lips, which anyone who spends more than 10 minutes around me is likely to see. The reason they’d discourage it is because they didn’t want their kid to be made fun of for being different. I did get bullied occasionally for being noticeably odd (although, side benefit of autism, I didn’t always realize it was bullying at the time). In the long run, I ended up with a sense that the bullying was the fault of the bullies, not mine.

To continue with the example of stimming, for a long time, a lot of teachers thought that a child who was stimming was not paying attention in class, and would therefore discourage or even discipline the behavior. While there are definitely cases where a child’s fidgeting indicates boredom or unexpended energy, the truth is that for people with autism like myself, stimming helps us focus, stay calm and self-regulate. Now that people are more aware of the needs that autistic folks might have, there’s more acceptance of them.

Some people have asked me why I bothered to seek a diagnosis when I was doing pretty well in life without one. The answer is: I was starting to struggle. Dating and relationships felt more difficult for me than they seemed to for my friends. I had some difficulties at work, not picking up on cues that my colleagues got without being directly told. And I had a sneaking suspicion it wasn’t normal to eat the same breakfast, lunch and dinner every single day without getting bored. (How could I get bored of something I enjoy, I ask you.) And finally, I started talking with people with diagnoses and realized that the way they processed the world was the same way I did.

I’ve been autistic my whole life, apparently, but it still feels a little new being officially on the spectrum. Even though it hasn’t come with accommodations or a treatment plan, receiving my diagnosis from a professional helped me enormously. It lifted a weight off my shoulders that I hadn’t even realized was there, and that weight was blame and shame.

It turns out I wasn’t defunct, or poorly assembled, or lazy, or just plain stupid, or boring because I like routines and hate surprises (yes, even fun ones). Because even with all the love and support from my parents, I still felt that way sometimes. I’m not so autistic that I can’t tell when I’m not fitting in. And it’s a crappy feeling. But I’m not bad at being neurotypical. I’m just good at being autistic.

However, if you have a preteen girl in your life whose bedroom walls are covered in National Geographic cutouts and who will go on and on at length about why the the lion can’t be king of the jungle because lions live on the savannah, which are grasslands, you might want to go ahead and order her a neuropsychological evaluation. It could save her some trouble down the road.

Victoria Hugo-Vidal is a Maine millennial. She can be contacted at:
themainemillennial@gmail.com
Twitter: @mainemillennial